Hi!I understand how disappointed you must be but one lab result is not enough. Things numbers can fluctuate a lot. My husband goes up and down between 74 and 69 all the time. The doctor has not labeled him CKD and just checks his numbers once a year. I know it’s hard not to Worry but if the rest of your lab work is fine then it’s a good sign. Have you been diagnosed already? Protein is the urine is also an indicator of fast progression. Have them check that.
Thank you so much.Well, I was diagnosed with ITP 6 years ago. But ANCA negative, anti-dsdna normal, IgG normal.
One of my nephrologists said there is a possibility that whatever has started my ITP is the culprit, but my hematologist never cared much about it. My nephrologist says "Talk to your hematologist about the treatment." my hematologist says talk to your nephrologist about your kidneys.
My hematologist didn't start the treatment cause my platelet counts are always above 50,000.
I know. I'll stay on the plant based diet for sure. I was just hoping it could work for me 😅
Where are you located. I cannot believe that no one is trying to find out what is wrong. How is your blood pressure? Were you watching our salt intake? Were you totally meat free? Dairy free? Smoking? Alcohol? Are your working out? There are SGLT 2 inhibitors that might help as well. You need NEW doctors.
Thanks for the reply!Well, my blood pressure is kind of complicated. It was usually low as far as I remember. (110/65) But recently since last year my readings are high (130-135/80-85) I'm not sure if they show my true bp, cause I know I'm kinda scared of the sphygmomanometer! I know it sounds funny, but when I see it my heart starts beating faster, and I can feel it. (whether at the doctor's office or at home) I'm afraid of seeing high numbers. So, I don't know what to do. I'm afraid if I take pills for my blood pressure, my bp might go too low?!
Yes, I've been watching my diet the whole time (since 8 months ago)
Less sugar, less salt. I don't drink and smoke at all. I never did.
Like you I was afraid too. But I got started on 2.5 mg of Lisinopril and after taking it for six months the high protein in my urine went to trace and I am used to have the very low BP...drinking water helps. But kidneys don't like spikes in pressure. My prior Dr. Had made the mistake of not starting me off on the lowest amount possible, so then they had give me 10 or 29 mg of ACE 0R ARB I always vstopped taking it. But with the 2.5 mg and the stark realization that my kidneys were screaming for help and needed me to do something, I stuck with the pills. Like you my BP always ran low and never worried me when it went up 130/80 but that was too high for me body.
I just caution people reading these posts that meds that work for one person may not be appropriate for others. Ex: I had been taking Lisinopril for at least 10 yrs, and for a few months my nephrologist kept me on it, but 6 months of labs later she had me stop it completely and prescribed Hydralazine instead. I only mention this because a particular drug may not work for some but are great for others. If you have a good nephro that you trust and that consistently monitors all of your labs, she/he is the person you should listen to. I'm only concerned that a person reading info here will ask/demand that they get a med that may not be the best for them. As it is often said, we're not doctors and we can't dispense medical advice on this site. We can only try to help our fellow sufferers. Here's to your good health!🥂
No doubt. Dr. need to start with the smallest doses too. Most just prescribe the recommended about by thE Pharm and that doesn't work for everyone either.
Have you considered a naturopathic practitioner, ideally one that specialises in CKD? Like you, we are currently following a DIY approach to try to reduce my mum's increasing proteinuria (her serum results eg eGFR, consistently improve) but, if unsuccessful, we'd have no hesitation in contacting a relevant NP. Yes, there's a cost...but it's health!
I presume you referred to a "nephrologist" not "neurologist" (!) for guidance. Re prevention issues, my mum's nephro has not been of any use tbh but others may be.
A naturopathic practitioner? No I haven't, but that can also be an option! There is only one in my town. I read people's comments about him, some of them say he's a fraud hahaha The others thougb say he does miracles! XDI was also thinking about visiting a homeopathic practitioner actually.
Maybe I'll visit both lol
I'm glad to hear your mum's lab reports have shown improvement and I hope the proteinuria will improve as well. 🤞
Its only a number that fluctuates often. Get three or four in a row before you believe your CKD has stabilized,ed. You know a healthy diet can't fix everything. I'd look for any change that took place during the past 6 months, i.e., such as new meds, an infection, added stress, etc. A year or so ago, I had a bad dental infection that didnt get well treated because everyone attributed the pain to TMJ. Eventually, I was treated with lots of antibiotics and anesthesia for a root canal. My GFR dropped down to the 30s and I've been struggling with it ever since. Dont despair. Keep going with your healthy diet and have it evaluated by a renal dietitian to make sure its healthy. Also, become a stronger advocate for yourself when it comes to any changes whatsoever in your daily functioning that could effect your kidneys. Never stop Educating yourself. Never stop questioning decisions made for you when it comes to your health. I never had TMJ and it took my persistence in getting the diagnosis corrected and treated. Keep us posted as to what happens. Best to you...
Thank you for your reply I know, well, I had heard a lot about kidney function improvement in many people after going on a plant based diet, so I was hoping it could work for me, too. But I think I wasn't that lucky. Yeah, maybe that's because of my stress then, cause I've been suffering from health anxiety since my problem started. I should do something about it.
I wouldn't be surprised if your stress brought on the GFR decline. I strongly suspect that some anxiety I had last year, right before I was diagnosed, could be the culprit for my CKD. I had it BAD. I am (and was) on blood pressure meds but my doctors suspect high blood pressure caused my CKD. I suspect that my stress was spiking my blood pressure even though I was taking medicine.
Try to get your stress under control. Your GFR is not that low and you have a LOT of "wiggle room" here before things start to get serious. Not that you should take this lightly (obviously you are not!) but you have time on your side. As others have said, be your own advocate, do more research, put your foot down with your doctors, etc etc. At least you know you have a good diet and that is under control. (Though I am sure there's always room for improvement?) I read somewhere that people with autoimmune disorders should try a special diet called the "AIP diet." This might be worth a shot for you. I tried it for a while when I was initially told I had something autoimmune going on. (Turns out I didn't.) It's rather restrictive, especially with you already eating plant-based, but you might look into avoiding the classic foods that are avoided in the AIP diet, which, if memory serves are "nightshades" like tomatoes and potatoes.
Anyway, we all wish you well! Keep pushing! You WILL get to the bottom of this!
I know right! I think I have health anxiety. I've had it for years! I look at my nails, see a line, look it up on the Net, and it says I have cancer! So I start freaking out...I think the first thing I gotta do is stop looking up symptoms on the Net! My anxiety was less severe before. I used to spend more time with my friends out there, but during this pandemic a lot of things have changed. I've been working from home and I'm almost always home. I have to find something to do to take my mind off these things.
Oh, I never heard of AIP diet. Thank you. I'll look it up. It must be interesting. I think all doctors should do research on new findings to better help their patients, but most of them don't. Yeah, ITP is an autoimmune disease, but I don't know why my hematologist doesn't seem interested to know what caused it in the first place. I was reading even an infection can start it.
Thank you very much for your reply and I wish you the best of luck as well! 🤞
Your health anxiety sounds just like mine! I see a little spot, a little bump on my skin, a line, whatever, I search to see what Dr Google says, and then I go down a rabbit hole of stress, stress, worry, worry. I am ashamed to admit to the silly, trivial things that I absolutely was a wreck over (until I finally saw sense or the "ailment" went away on its own). The worry takes over all my thoughts and I fret and fret. And yes, just like you, it went into hyperdrive during the pandemic. In a way, it's nice to know it's not just me that has this problem!
My sister had an ailment (thrombocytopenia) which I gather is similar to ITP. She was in the hospital for a kidney infection, and all of a sudden her platelets were really low (like under 10,000). She had to have platelet infusions and all sorts of treatments. They wanted to put her on some sort of chemotherapy drug, but she resisted. Just as she was ready to succumb and take the treatment (which would have been a little too risky for her tastes), suddenly boom! NOTHING! Her platelets bounced back to normal and have been there ever since. She'd had the condition for about a year and the doctors had assumed it was chronic. The look on her doctor's face was priceless when he came in to tell her that her platelets had bounced back unexpectedly. (He was so thrilled, it looked like he was ready to do a jig!) He theorized that she had some sort of shock to her system during the kidney infection or something and finally she recovered from it and so her platelets bounced back.
Anyway, I ramble. I just want to offer encouragement. Doctors don't know everything and sometimes we can really surprise them. Put your foot down or find another doctor if your current one seems slow to take any action. I wish you well!
Yeah... The health anxiety can cause blood pressure spikes... Chronic anxiety is really harmful! Yeah, now I'm preaching about something I suck at! Controlling anxiety! Lol
I'm happy for your sister... Yeah it seems like sometimes thrombocytopenia goes away on its own, especially if it's acute.
Unfortunately, I've had it for 6 years. I'm 90% sure an infection caused it. But whenever I say this to my doctor he says, that's ok and there's nothing to worry about...
Yeah, there's nothing to worry about for you doctor. Your kidneys are fine!
Ramble?! No! I enjoy talking to you people. It helps me a lot and yes it does encourage me.
We're happy to ramble with you! It is a comfort to know that others have the same kind of anxiety that I do. I sometimes feel especially nutty for feeling the way I do. Just knowing that "it's not just me" calms me down a lot.
I was having health issues years ago. Long story short, I basically had a panic attack (which I never had even heard of before it happened). I was 26, and in perfect health. Never had an issue other than an occasional cold. After that night, I woke up the next morning, and every joint in my body hurt. They cracked when I moved a lot, my muscles were tired and weak, and I literally thought something drastic was going on (Yes, like cancer. I convinced myself that it was something horrible like that). I saw my PCP-nothing. Was referred to another doctor, and still nothing. I finally ended up at the Medical College of Wisconsin’s internal medicine, where the doctor ran every test under the sun to figure out what was going on. He found nothing. He looked at me and said, “Scott, I’ve done every test I can, and nothing. I believe what is going on, is stress.” I told him that if he could crawl inside my body, and feel what I feel, you would know it’s not stress! He understood how I felt, but was confident that there was nothing going on medically. This was about six months into my health decline. I felt like I was slowly wasting away. I had lost about 25 lbs., and that’s a ton for someone who weighed 130lbs. My dad didn’t even recognize me when I flew out to visit him. Then one day, I found the greatest book ever on stress, called ‘The Stress Solution’. I call it my bible on stress. After reading it, and taking the stress test in it, my eyes were opened up to the fact that that doctor could’ve been right. I devoured that book, and did the exercises (both mental and physical). It took awhile, but I got back to my old self. Healthy as an ox. I guess what I’m trying to say is, stress can cause such a wide array of health issues, that it’s mind boggling. On the flip side, the mind is capable of miraculous recoveries too. I would highly recommend getting a copy of that book, and check it out. It was written at the time, by the world’s foremost experts on stress. It’s a rather interesting read, as it’s not all dry and boring, but has numerous anecdotal stories of patients he helped, and the opening of the book is his story, and how even HE didn’t realize the stress he was under. Great read. If you can’t find it, I would be more than willing to lend you mine. At the stage you’re at, it’s best to keep the CKD in the back of your mind as you try to lead the healthiest lifestyle you can. The diet part can be an absolute nightmare, as far as figuring out what you can and can’t eat, but it doesn’t sound like you’re at that stage yet. Control BP, exercise, eat healthy, and GET THE STRESS OUT OF YOUR MIND!😁 The numbers do fluctuate, so don’t put too much stock in them. I remember that I forgot to not exercise three days before my tests, and my numbers were worse. The next time, I remembered not to exercise before blood testing, and my numbers went back up. And stop looking for illnesses!😉 Best of luck!
I have Graves Disease, an autoimmune disease that causes hyperthyroidism. Probably had it all my life but until my daughter was in a car accident and the resulting stress caused a thyroid storm I didn't know I had it. It's one of the weird things genetics can do, even though no one else has it in my family. I also have a rare retina dystrophy again, genetics. So maybe stress causes the ITP to "flare" like lupus does?
Hi Sharam, I believe your profile said glomerolonephritis and that is manageable with plant based diet according to the literature. Since you have an autoimmune disease if your eGFR ever gets really bad like into stage 4 below 30 the Neph may be able to treat you with Prednisone as mine did for me with my Scleroderma and my eGFR of 28.
I understand you worked hard and are disappointed in the 6 point drop, but as long as your eGFR is above 60 without protein in the urine you are sitting pretty still.
Please continue on the plant based diet. I have been a vegetarian since the age of 10 and my eGFR went down to 28, can you imagine how it would have been if I'd not have been a vegetarian? I'd probably have been on dialysis ten years ago.
Also, please make sure you are drinking fluids. Especially in the weeks before your next labs. If you are slightly dehydrated your numbers will drop and can drop that 6 points.
Please see your cup as still half full. Below 60 is the number to start worrying a little, above 60 you still are doing well. I realize you are young and have an autoimmune disease but there are things to be done. Did your Neph suggest you see a Rheumatologist? It's probably way too soon to start Prednisone or CellCept on you since your body is doing ok, but keep on the plant based diet, just think, it could have dropped 15 points otherwise?!
I like to think on the bright side since I have a plate full of various autoimmune diseases in addition to my CKD. I want you to be grateful and keep up the good work.
Don't be sad, be happy and positive in 2022. Stress is not good for the autoimmune system or your body in general.
Well, about that glomerulonephritis. Last year, I just read some symptoms and found that many of them were similar so I kinda self-diagnosed, so I typed it there to get more info about it. I was never really diagnosed with it.
I was actually hydrated before the test. I usually drink 1.5 to 2 liters of fluids a day...
Yes, I'm going to stay on the diet-regardless. Who knows how worse the drip could've been if I wasn't on it!
I was diagnosed with ITP, 6 years ago. One of the nephrologists told me that it is possible that an inflammation has started all this, so I should start my treatment for ITP and its cause. But my nephrologist didn't say anything about it. Cause my platelet counts are not too low. (usually above 50,000)
He never suggested visiting a rheumatologist though...
I'm so sorry to hear that you've been dealing with so many problems at the same time, but I'm glad you can stay positive and strong despite all of them. That's great. Hope things will change for the better for everyone here...
Thanks, Sharam. I find my whacky sense of humor sees me through the hardest of times. And a support system of good friends. I hope you have those two things. If you need the supportive friends you can find them in this forum, I know I have.
I'm sorry you're a little down about your new numbers. I'm just getting into WFPB /Flexatarian "lifestyle" to see if it'll help in the long run. I know it'll be better than the packaged easy stuff I've been eating. Please don't worry about your numbers dropping...they're still really high. And they fluctuate from labs-to-labs. I think most folks here would LOVE to have your numbers. I'm not saying that to discount your feelings, please understand. At least you're trying to be proactive, which is great...just don't panic at 69 and an 8pt drop. Ex: 34 to 22 in recent labs 3mo apart for me. Take care, stay connected, and don't overly worry until you've spoken with your dr. and/or nephrologist.
Thanks, Sharam. You're very young, and there's plenty of time to save kidney function. Make sure your dr. monitors you regularly, and when the time comes find a good nephrologist. From others community members, it appears that diet has so much to do with it...don't get discouraged on your plant-based diet. Perhaps it helped keep your numbers up, even though they dropped a little. As others have said, they can fluctuate, so don't panic with this drop. You're still well above worrying, and worry & anxiety can damage more than just your kidneys. Hang in there.
This again a re-print from my precious post. It helps to be cautious but don't let it not live a normal life-----‐---------------------------------------------
My Nephrologist (in Singapore) and my sister (GP, Pedia, Marine, Airline, etc. in Au) explained to me this way.
1. Our body (specific our own) works in a fascinating way but not all is known. What and how it is now is a product of how we treated our body thru the years
2. Tests to determine how organs are functioning are snapshots of a particular day or period. They will vary with the next one depending on a lot of factors (again what we did on that specific in between period.
That is why my Nephrologist do not rely solely on one single test or various tests taken at one specific day. He looks at a range of dates and progression.
3. Specific to the kidney - for each stage of CKD, there is a range of test results. There are studies on those ranges but we have our own - unique to us only. This is what my Nephrologist first tried to establish. Baseline it, then he is able to somewhat predict the deterioration and stages to watch out (again, not perfect science)
4. So once I go into a specific stage, the results of all my tests (creatinine, eGFR, albumin, protein urea, cholesterol, kidney scan, MRI, radiation stress test, etc.) will be in that range. If I change anything (become vegan, change med, take vitamins, exercise more/less, smoke/dont smoke, lose/gain weight, eat fast food, salt/sugar intake, etc.) the results of my tests will be within that range (+- error factor). As long as it is within that range, I should be OK. I used to cheat (become healthy a week or two before the tests) until my Nephrologist of 14 years explain this to me at the start of our long relationship.
CKD can only be delayed, not heal.
5. Probably the best way to gauge the kidney function is biopsy. But that is invasive, thus done only when really necessary. This can show scarring, cancer cells, structure, etc. I have done 2 biopsies in the 35 years I had CKD.
Before my living kidney transplant, my creatinine was 5.5 and eGFR was 5. (I've read people doing dialysis at 10 eGFR) My Nephrologist gave me 1 more year to decide without going thru dialysis. But he also mentioned that the success rate is affected the longer I wait (once more, not a perfect science). So, within 3 months I had the transplant. The body works in a mysterious ways.
So, talk to your Nephrologist on better understanding of what I mentioned above. And he can probably create the same matrix specific to you.
Getting hang up on a single baseline taken on a specific day is like watching the TV headlines. Better if you read the whole newspaper or magazine article.
Thank you so much for your very informative reply. It did help a lot. You're right. One test doesn't mean much. Unfortunately though, after comparing my tests from 6 years ago with the recent ones, it seems like my GFR has been declining since then.
6 years ago it was 88
2 years ago it was 80
Last year 77
And now 69
So, I guess there's something wrong here...
I will talk to my nephrologist (maybe a new one, cause this one doesn't really listen to me and rarely answers my questions!)
I'm really glad that everything worked well for you. That's awesome.
And thank you again for the very useful information
I used to track in a graph all my lab results - compare it with the range during that period. As long as I am in that range, I am OK.
During a specific range of periods, I note down any changes in my activities, food intake, etc. It helps explain the up and down spikes.
- Christmas holidays
- Went on vacation, cruise, etc.
- Ate healthier
- Exercise more, less
- Aged 5 more years
- summer - more outside activities
- winter - less activities
- had cold - drank approved meds, etc
- others
These affects test results.
I have OCD (controlled and use it to my advantage) - I organize, plan, anticipate, read, research, track/monitor, etc. I have better control of my situation (and destiny) and peace of mind.
Your kidney function will go up and down and this is completely normal. Don't get disheartened by one set of blood tests. You might have been slightly dehydrated at the time of the test. Even the way they test for creatinine is quite crude and subject to at least a 10% tolerance. I honestly think I could have delayed starting dialysis if I had stuck to a plant based diet and taken better care of myself. So my advice to you would be continue to do what you have been doing.
Thanks for the reply.Actually, it's been going down in all my tests since 6 years ago, and I drank 7 glasses of water the day before and 2 glasses two hours before the test... I don't really know
Its not enough to be plant based if it consists of lots of proteins and salt and processed foods. If you eat fruit until 4, then have a cooked low protein wfpb meal e.g rice and veg and some sauce, your labs will improve.
Be careful of "plant-based foods:...we tend to think if it's PB it's good for us, but many items (like fake burgers) are actually worse for us because they contain so many fillers.
Answering an old post... Flexitarian means I'm including lean protein, dairy (cheese, milk) into more whole foods (veggies, salads, "clean" non-processed). I'm trying to eliminate packaged, processed stuff (my downfalls were Lunchables & Hormel Compleats because they're so easy and I can't cook every day). I'll never be a vegan or vegetarian...I know that it just isn't me, although it works for many people. Trying to protect my kidneys and also lose weight.
I hope this Community is helping you to not overly stress about your kidney numbers. There have been some very good posts for you. I would urge you, please, not to invent diseases for which you haven't been diagnosed. I know nowadays it's so easy to Google any symptoms and then self-diagnose yourself with a myriad of diseases...autoimmune, etc. It can really freak you out and raise bad levels of all kinds of things in your body. And perhaps seek info from respected friends, pastor, trusted doctor, etc. for referrals to good doctors that you will be able to trust. It's important to find PCP, nephrologist, cardiologist, etc. that will treat you as a whole person and work with any specialists you may need, and watch over you as a whole person. Perhaps after finding drs you think you'll like, make consultation appts with them and find out their approach to patient care. Did you like them? Think you can trust them, did they answer all your questions? (make a list and take it with you). I may be misunderstanding you entirely, and I apologize if that's the case, but your kidney numbers are good, yet you've already been to 3 nephrologists and are looking for a new one. Typically we aren't referred to a nephro until our labs are consistently in danger ranges. I'm afraid you're causing damage to your body with all the stress of diseases you don't have. Stress can be very bad for you, both physically and mentally. Please don't misunderstand me, or anyone else on this site, who is worried about you. I think you're an intelligent person, and compassionate to others based on your responses to what others are saying. Just maybe ease off trying to find multiple diseases that you may or may not have. I hope you find good providers and ways to protect your kidney function. You've already made strides by changing your diet earlier this year, seeking good medical care, and participating in this forum. Best of everything and good health in 2022.
Thank you very much. You're right. I didn't have much knowledge about the plant-based diet and thought it was just not eating animal-based products... I looked into it and it tuned out that there should be restrictions even when you're on a plant-based diet, especially protein at an early stage...
Actually, one of the three nephrologists I went to said that I do have CKD but my kidney sunction has only mildly reduced and I don't need to worry about it.
The second doctor said it can be CKD, and advised me to go easy on salt and meat and control mt blood pressure for now and repeat the tests once or twice a year, just to monitor my kidney function...
So I just started searching the Net to know more about it and the more I found out the scarier it got! I read published articles here and there about the younger you are when diagnosed the faster the progression of the disease, and a lot more things that scared the heck out of me!
You're kind of right cause I tend to catastrophize and imagine the worst-case senario!
It all started 6 years ago with my ITP... The diagnosis took two years and was finally made after a bonemarrow biopsy! The whole type I thought I'd had blood cancer or something! I was totally normal before that... Who knows... maybe all the stress and anxiety I went through is the culprit in my kidney disease!
I know my doctors said I don't need to worry about it, but this forum is full of people who either were told nothing about their kidney disease or were told there was nothing to worry about! And that worries me.
But yeah, I have started this diet and will continue and will also look more into it
HI Sahram,My first advice for you is stop playing doctor. NO good comes from self-diagnosis. Then, yes, your numbers are declining, but not that bad. Find a doctor that will take the time to help find a cause. It is your life, and you are the captain of your ship. Only you can make this happen. Doctors will not make the effort unless you do. Sounds like the current doctor is not supporting you.
The good news is that you are catching this at an early stage. Good for you. Stick with the diet and healthy lifestyle. That is in your control.
The sad news is that whatever is going on may not be easily discovered. You may get to the point where they just do not know. Find a good nephrologist who is current on CKD drugs and conditions and willing to investigate. Also seeing a rheumatologist is a good idea. If inflammation is causing the issues, a rheumatologist should be able to help discover the cause and maybe find a solution. Inflammation plays havoc on your body.
Also, I hope you have done a prescription or medication review to make sure everything, including over the counter meds are not causing kidney issues.
There is little to do other than what you are doing until they find a cause. Even then, there probably won't be any magic pill to fix your kidneys.
I know you decline is frightening you and to a point that is good because it is making you aware. But stress is also very bad for the body. Try to take things in stride. Keep working at discovering what is going on, get a better doctor, and keep taking such good care of yourself.
Thank you so much for your reply.Yes, you're right. I need to find another doctor, and I'm going to. I try to reduce my stress. I really do. But like after an hour or two, I start thinking about it again. But I'll try harder from now...
Sure, I'll see a rheumatologist as well. My hematologist never cared what caused mu ITP. He just wanted to rule out cancer and he did. It'll probably take a long time for the doctors to discover the cause!
Well, I haven't taken any pills for years except for vitamin supplements (b, c and d)
Two days before the test I took a b12 supplement, but I don't think it can affect the results! Or can it?!
I hope you're right about dialysis. That's what's scaring me. To go on dialysis sooner than expected...
But I'll stay on my plant-based diet anyway. It could've been even worse without it!
Thanks. Well, yes, you're right about hydration. But I usually drink plenty of water and liquid every day. 8 glasses. Around two liters. I also drank two glasses (500 ml) of water two hours before the test... So... There must be some other cause...
For most CKD patients your egfr is paradise so you should be happy. Plant based isn't a bullet proof diet and for some you will run into other issues that will make your CKD worse . Such as Anemia and B12 deficiency. This gives a poor outcomes and tends to advance faster The truth is you are not required to change your diet till you are near the end. Also you have to find out what type of CKD you have first. especially for renovascular you are in luck because it is curable In clinical definition you may not have CKD yet but have other underlying conditions such as an autoimmune disease or some other issues that block blood flow to the kidneys so fix those first. finally at this stage you should concentrate on your heart health instead of your kidneys. Because this is a sign of heart disease. At most you should only reduce sodium quit NSAID alcohol and smoking. Eat mindfully with light to moderate exercise and enough water but not over and relax. I discovered impaired kidney function at 45 with egfr 60 which went down to 43 in a few weeks but now back at 60 with no diet changed and reduced my medication to just 1 pill I have hypertensive nephrosecrosis a progressing CKD that cannot be stopped in any way even with BP control andthe cause is unknown . I get upset because I was heathy active with no bad social habits such as alcohol drugs or smoking and definitely ate well . So be happy Take care
Hi Sharam, I'm sorry that the plant based diet didn't give you the results you were hoping for. I started plant based a few months ago and I'm getting labs soon. I don't mind sharing my result when I get it. Honestly, I'm not expecting too much of a change because the cause of my kidney disease has not yet been treated. My nephrologist wants to discuss treatment next month. My cause was determined through biopsy to be low blood pressure, caused by a rare disorder I have. It sounds like your team of doctors are not sure what to do (or think treatment can wait) and are passing the buck instead of consulting each other, leaving you in the middle of it all. At 37 years old your eGFR should be at least 90 or more. If the ITP could be the cause maybe you need a hematologist that is a specialist in ITP (looks like its a rare disorder) who could see the connection and thus would be willing to start treatment. Couldn't hurt to get the opinion of the a rheumatologist. If its not the autoimmune maybe you need a second opinion from a nephrologist that can try and sort the cause out. I hate getting second opinions, but sometimes it has to be done. Maybe they will tell you the same thing but at least then you know you tried. Although your eGFR is 67, I think you need to know the reason there is a downward trend. I'm 45 years old and my eGFR has been on a downward trend for 7 years or more and now I'm at eGFR of 40. I'm not happy about it and think it would be better if it were treated sooner. I wish you luck in finding that cause and finding doctors who will help you. Try not to get too stressed about it all, as it rarely helps anything, but is easier said than done. Happy Holidays Sharam.
Hi Jayhawker, Yes I just had a 24 hour blood pressure monitoring done. At night my average was 85/64, during the day 105/52, however that is with interventions of compression leggings, extra fluids, and extra salt to boost the BP. I have seen it as low as 70/x (can’t remember the diastolic number). I have orthostatic hypotension and I get blood pooling in my legs. My doctor said he wants my BP to be in the systolic closer to 130s. That may be different than people who have high blood pressure as a cause? I’m guessing it’s because I need better perfusion to the kidneys.
Thanks for sharing. Mine used to run consistently in that range for close to 4 years. It would also suddenly plummet to approximately 67/46 several times a day. It was during that timeframe that my kidneys went from a GFR of over 90 to s GFR of 28. I kept asking the nephrologist I saw at that time if my BP was too low; could that be causing my decrease in renal function. He consistently said no, it wasn’t lie enough. I’d leave appointments with him wondering how much lower it would have to be …
Now, three nephrologists later, my BP runs approximately 118/68 and no longer plummets. Proper hydration is the key for me. My renal function had deteriorated to a GFR of 8, Stage V. It is now coming in between 19-21. I’m pleased to have this much renal function but can’t help wondering how much renal function I’d have if my first nephrologist had provided appropriate care.
Hi Jayhawker, At first my doctor said it wasn't the low blood pressure either. Then he did a kidney biopsy that came back as acute tubular injury and then he changed his mind. Sounds like we had a similar experience:/ I too wonder if things could have turned out better and I wonder why none of my doctors noticed. Maybe they disregarded it because I wasn't hospitalized or in the ICU. But looking back at the labs they were consistently going down. Do you just have to hydrate with water or electrolytes too? I think my doctor is considering adding midodrine to boost my blood pressure. Thanks for talking to me about this Jayhawker as I haven't had many people tell me low blood pressure was a factor for them.
For me water seems to be sufficient. I, too, have nit run into many who have had low blood pressure either. My current nephrologist more or less inferred that my initial care had not been optimal but that it was not possible to go back now. I’m going to ask my current nephrologist if he plans to do a biopsy. The first one did a biopsy which showed minimal permanent damage at that time, late Aug 2013. So, that nephrologist expected pretty close to a total rebound. Of course, just the opposite happened.
My current nephrologist is confident that the improvement in my renal function from GFR 8-9 to GFR 19-21, will hold for the foreseeable future with the only deterioration being age-related. A biopsy could clarify my change in function. If he’s right, I’m sure my transplant nephrologist will move me from active to inactive status on the transplant waitlist. I’m still not on dialysis. I’d just like the answers a biopsy would likely provide at this point.
Hi Jayhawker, My biopsy also said mild injury. So, I asked if I only have mild damage then why is my eGFR so low? He didn't have an answer, and he said he didn't know if it would get better. I'm guessing it won't get better from here. I hope you can get the answers your looking for in a biopsy. Thank you so much for sharing this information with me!
Thank you very much, Sarah for your advice. I'll try to do them all. Especially, I need to find a doctor who's also a good listener! I'm tried of being passed like a ball...I really hope your results will come back fine. Fingers crossed!
Hi Sharam, I got my lab results back today. I’ve been lower protein, mostly plant based now for at least 3 month or more. My eGFR is 44, last time 42. So it didn’t seem to improve the GFR for me either. Maybe it helps preserve but not increase…
I’m sorry to hear this man. The hopeful outlook is that treatment in the future looks promising. However, overall health will help prevent things from progressing too rapidly hopefully. I will say that some labs use different calculations and some are outdated bc they don’t take into account various factors like height and weight and muscle mass.
I’d recommend a cystatin test to see how things are functioning. Also, look at your levels of things. I freaked out bc it looked like my gfr was declining but my creatinine level and other labs have been steady with minimal fluctuation since 2014 for me so that kinda helped me find some ease. Also, finding out different labs may use different calculations or outdated ones helped too lol. I would recommend trying to compare your numbers to the 2021 NKF formula.
All in all, I wish you the best and hope that things get better at some point for you whether that’s with a new type of treatment that eventually becomes a reality or finding the right diet that works for you!
Let me know how it goes when you get it. Feel free to pm me with updates. I’m am around your age and like you, I’m trying to figure this all out without going crazy haha.
I think the future is bright regardless and as long as we never give up there will be positives there for us!
Thanks a lot! If course.I went for the test two days ago and the results will be ready in 5 days... 7 days for one test sounds a lot, but maybe it's a complicated test, I don't know! Lol
And yeah! The future is probably bright! Well, I hope so! Lol
Have you tried focusing on high fiber plant foods?Specifically soluble fibers - chia seeds, rolled oats and flax seeds are fiber bombs. I've been rotating these in my smoothies every week and surprisingly my GFR went up 8 points during routine bloodwork.
Hang in there man. Praying for you. Your due diligence will get you to the right answer. A thought - recent studies have shown a correlation between gut health and kidney health. Have you tried a GI doc? Maybe need to diversify fiber more. Rotate flaxseeds with chia seeds, lentils, rolled oats, and black beans. All great sources of fiber for the gut microbiome
Thank you very much for the advice. 😊I'll keep that in mind. Yeah, more fiber. I've actually been having more fiber-rich foods recently. But maybe I can have more!
Well, my last year's 24 hour urine sample shows 45mg/d protein, and 900 mg creatinine. I think 900 mg is kind of too little for me considering my serum creatinine.
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